http://www.speed4sarah.com/a-beginning/?utm_source=rss&utm_medium=rss&utm_campaign=a-beginning LET'S MAKE ALS HISTORY Tue, 06 Nov 2018 20:24:48 +0000 hourly 1 http://wordpress.org/?v=3.6.1 http://www.speed4sarah.com/a-beginning/#comment-2048 Noelia Wed, 14 Sep 2016 16:29:19 +0000 http://www.speed4sarah.com/?p=2342#comment-2048 Sarah, you speak for so many of us with chronic conditions. It does not have to be ALS, though I understand that you play in mayor leagues. For me it is not how tired I am many times or things like I am not able to get ride of the idea of having a second child (even when rationally I know that it would not be good for anybody… but is a dream that I cannot lost just jet). My husband sometimes cannot understand how difficult for me is to plan with 6 months or 1 year in advance. I mean… In a good one year I would have see my doctors several times, they are the ones who control my schedule…
Well, a little bit silly probably in comparation with your ALS. But what I really mean is that it makes me feel like a very bad wife, a fraud. You think you are going to be certain kind of wife an mother and you are something very different…

]]> http://www.speed4sarah.com/a-beginning/#comment-1999 don ng Mon, 05 Sep 2016 03:27:24 +0000 http://www.speed4sarah.com/?p=2342#comment-1999 I have this bulbar mnd four years ago
recently i went for my botok jab for my saliva problem but now i cant even swallow’
‘
can anybody help thanks
don ng

]]> http://www.speed4sarah.com/a-beginning/#comment-1995 Marty Agresta Fri, 02 Sep 2016 00:21:41 +0000 http://www.speed4sarah.com/?p=2342#comment-1995 I was diagnosed in 2007 at 55 yo so I too am slow progression. I have experienced the same emotions that you’ve shared with the exception of having all the frustrations of not being able to do all the normal “mom” activities with such a young daughter. My heart breaks for you. We have ten grandchildren under 16 years of age and I often wish they had known me as a grandma who could play, hug, and do for them. Life has been reduced to a chair or bed and an iPad or tv. The blog you wrote about questioning the “blessing” of slow progression really hit home. I’ve often thought it just might not be such a blessing but a test of perseverance . Each morning finds me wondering why I should get up today. Then I remember what a disappointment I would be to my husband and family if I didn’t give each day my best. EXHAUSTING, isn’t it! I have to believe that as long as God gives me breath, there must be a purpose. I wish you many snuggly hugs and sweet words to make up for all the frustrating disappointments that seem to fill our days.

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